Abstract
Background: Even though there are many patient organizations across Europe, their role in impacting health policy
decisions and reforms has not been well documented. In line with this, the present study endeavours to fill this gap in the
international literature. To this end, it aims to validate further a previously developed instrument (the Health Democracy
Index - HDI) measuring patient organization participation in health policy decision-making. In addition, by utilizing this
tool, it aims to provide a snapshot of the degree and impact of cancer patient organization (CPO) participation in Italy
and France.
Methods: A convenient sample of 188 members of CPOs participated in the study (95 respondents from 10 CPOs in Italy
and 93 from 12 CPOs in France). Participants completed online a self-reported questionnaire, encompassing the 9-item
index and questions enquiring about the type and impact of participation in various facets of health policy decisionmaking.
The psychometric properties of the scale were explored by performing factor analysis (construct validity) and by
computing Cronbach α (internal consistency).
Results: Findings indicate that the index has good internal consistency and the construct it taps is unidimensional. The
degree and impact of CPO participation in health policy decision-making were found to be low in both countries; however
in Italy they were comparatively lower than in France.
Conclusion: In conclusion, the HDI can be effectively used in international policy and research contexts. CPOs
participation is low in Italy and France and concerted efforts should be made on upgrading their role in health policy
decision-making.